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Sunday, January 25, 2009

So, as I mentioned, like, a year ago. We were able to meet with our RE, but the surgeon was running late. So we decided to contact him later. My hubby then began communications with him via email.

This is an excerpt of my hubby's email to the surgeon:

...And while the situation did seem delicate to us, the truth is that we weregiven information that was taken completely out of context. We knew it was yourrecommendation to only carry one child to term. I also knew that it wouldbe your opinion that, if we had the option, reducing Brenda to bearing onlyone child to term would be the greatest reduction of risk. However, our RE'snurse presented your recommendation to Brenda as if it was the end all, be all,final word on the matter and that something terrible was definitely going tohappen if she didn't reduce. Your letter, while factual, was presented to us assomething that was without option, hence...we freaked out.

While we don't consider this a "simple" matter of miscommunication, we donot hold you responsible for that miscommunication. If anything, you are theonly one (besides our RE) in all of this that, when asked, gave us a learnedopinion on how to proceed.

And the reply from the surgeon:

You are very nice to convey your thoughts on the matter in this way. And Imust say that your interpretation is absolutely correct. When I was asked togive my opinion on the matter (i.e. when I wrote the note last week) I made thewrong assumption that all options were open and I felt compelled to recommendthe safest one for Brenda. You also must know that SINCE writing the note Ihave polled several colleagues and they all feel that my concerns are extremebecause there is no data showing a prohibitively high risk of rupture in Brenda'scase.

In any case: I will be in Boston in ten days and will be happy to meetwith you.

We felt better. So our next appt was with the maternal fetal specialist this past Wednesday (the 21st). We had thenuchal translucency at the base of the babies' necks examined at our (nearly 12 week) ultrasound. One was well within the limits at 1.0mm. The other was just on the upper end of normal at 2.5 mm. Given that our donor was only 29 at the time of donation, the doctor is as confident as he can be that this is not an indication of a genetic abnormality.

But then......

My hubby and I had a long talk with the specialist. We went over all of my risk factors:

Two invasive uterine surgeries

A frozen pelvis (basically this means that I have so many endometiral adhesions that most of my internal organs are glued together). Thankfully, however, down near the base of my uterus where the doctor would perform a C section, there are few, and only "milky" adhesions--thus making surgery there much easier. The bad thing about all of these adhesions, is that IF something goes awry during the pregnancy (a uterine rupture) and it occurs in a place where all the adhesions are...it would be difficult for the doctors to get in there and make repairs...ie lose the babies and/or my uterus.

I still have 2 relatively large fibroids near my cervix. These were fibroids that the surgeon didn't want to touch, in order (I think), to maintain the structural integrity of my cervix.

The specialist said that because of all these risk factors that there was a greater chance than normal of a uterine rupture. However, he also mentioned that of all medical practices, OB has the fewest randomized trials in terms of studying outcomes of women with different risk factors (he noted that most women don't wan to be in the group not given the "tested" treatment"). Therefore, he had no statistics, no studies, just a gut feeling. His gut feeling? He "tilts" twords a reduction.

Not exactly what I wanted to hear, but this is becoming a common theme. "If all things were equal, we, the doctors, would feel more comfortable if you were only carrying one child."

However, in my hubby's and my world, all things are not created equal. There is no guarantee that we will be able to carry one child without complications, and there is no guarantee that we cannot carry two with few complications. I mean, when I think about it, my uterus has produced one 12cm fibroid that weighed over a pound and a second one that was 6+ cm, I think. I currently have two, 4.5 cm fibroids near my cervix (although they may have grown in the past 4 weeks....it was difficult to tell from the U/S report). I am beginning to think I have the most amazing uterus EVER. All I ask is that it stay put and just do it's job, instead it has to be an overachiever and add extra, rather large adornments on the outside. That sounds like incredible plasticity to me! :)

After meeting with the specialist, I initally agreed to have a CVS done on the fetus with the upper limit nuchal translucency. After reading more about it, I have changed my mind. Given that we know the donor's genetic makeup (we paid to find it out!), we are not at risk for a number of inherited chromosomal disorders. Thus, the only think that the test would be able to determine is if the child has Down's syndrome, Trisomy 18, or Trisomy 13. Both Trisomy 18 and Trisomy 13 are "mostly" incompatable with life--depending on the severity.

Instead, I think we are going to opt for and amniocentesis at 15 weeks. That's a little late in the game, but we can also tell other things from the amnio that will give us more information. At this point, we are only willing to reduce if one of the children has an abnormality that is incompatable with life or will cause them to suffer needlessly.

So, although we are still in a little bit of limbo. We have made our decision and are happy with it. Don't get me wrong, I am scared to death that something is going to happen at say, 6 or 7 months and we are going to lose the babies. Sometimes this fear grips me so hard, that I just sit in the bedroom crying.

But, we're moving forward. We have an appointment (dear Lord, all the appointments) with a high risk OB who specializes in women who are in need of complicated C-sections.

I actually went out and bought some maternity pants today. Squeezing into my regular jeans, although still possible, was increasingly less and less comfortable. In fact, when I put on the maternity pants they felt so good I almost starting crying. Then again, I am crying at just about everything these days. Either that or gagging. I'll be glad when that settles down, because, sheesh, my stomach muscles need a rest.

So here we are, wherever this is. The land of cautious optimism. The land of moving forward.

Sunday, January 18, 2009

Again, I want to thank you all for you kind words that you have left over the last week. This has been really nerve-wracking and exhausting.

But, I have good news! It seems that the doctors may have been a bit overly-enthusiastic about the reduction. Once they found I that I didn't WANT one, than they said. Oh, well there is no real need to get one.

Yeah. I am not really sure what to think about that. I will try to lay out how all of this happened over next couple of days, however, I succumbed to more nausea and work has been all-consuming...so it may take a while.

I will start with what I was read over the phone on (this is paraphrasing, as I realize that I left the paperwork at my work).

Due to these extreme circumstances, it is with much sadness that I recommendthat Brenda have a fe.tal red.uction.

Then freaking out ensued.

Here is a copy (with names changed), that was the response to that phone call. The email was sent to our RE, the surgeon and the doctor who performed the embryo transfer.

"Good morning, This email is on behalf of Hubby and Brenda. Werecently went through a successful embryo transfer using donor eggs and havetwo, healthy babies growing. We are terribly thankful for this.

There was a concern prior to the transfer as to how many embryos should betransferred. Brenda has undergone two myomectomies for the removal of uterinefibroids prior to the transfer. Dr. Surgeon had mentioned after the secondsurgery that Brenda would likely need to give birth via c-section and that hedid not think that she should carry twins or more. Prior to the transfer, Irecalled this conversation and specifically called Our RE's nurse toconfirm if this was still Dr. Surgeon's recommendation and if there was anyrecord of this for Brenda. I was assured by Our RE's Nurse that allrelevant information regarding Brenda's health would be available to thetransferring doctor on the morning of the transfer and that this informationwould considered in full before the procedure.

On the morning of the transfer (11/16/08), Dr. On the Day of Transfer(OTDOT) indicated that they recommend transferring two embryos. I againbrought up the conversation that Dr. Surgeon had with me regarding carryingmore than one child to term. Dr. OTDOT replied that while the c-sectionrecommendation was in Brenda's file, there was no record that carrying twins ormore should be avoided. She also felt that if this was a major concern, theinformation would be in Brenda's file. Dr. OTDOT did ultimately leave the choiceto us. Since the doctor recommended transferring two embryos and we had norecord to indicate otherwise, we agreed to transferring two embryos.

The procedure was a success and Brenda now has two healthy, growingfetuses. On Dec. 23, we had a routine ultrasound and visit with Our RE. I againmentioned the conversation that Dr. Surgeon had with us regarding carryingmore than one child to term. Our RE immediately called and emailed to confirmDr. Surgeon's recommendation. Dr. Surgeon was unavailable at the time. OnMonday, Jan. 5, [ed. note: Hubby got the day wrong] my wife received acall from Our RE's nurse. She began reading a written recommendation fromDr. Surgeon that carrying more than child to term would be very risky forBrenda and should be avoided. In short, it is now recommended that Brenda gothrough fetal reduction. I can not reiterate the actual recommendation as mycall to Our RE's nurse on Monday requesting this information has not yet beenanswered.

This is the very information we had requested prior to the transfer. Werequested this information because it would have directly affected the number ofembryos we would agree to transfer. Brenda and I are morally opposed to fetalreduction. We are also in a position to decide shortly whether to undergo thereduction as Brenda is entering her 10th week or pregnancy.

Brenda and I feel that if carrying more than one child to term would besuch a dire risk to her that this information would have been availablethroughout this procedure. If the information was available, then we feel thatit should have been taken into consideration by Dr. OTDOT on the morning of thetransfer. We would like a copy of this recommendation to review and to alsoprovide to the specialist who will now be advising us through the remainder ofBrenda's pregnancy. We feel that this information should have been availableprior to the transfer and would like to know when it was written. We are deeplydistressed to now be in this position and feel that it could have beenreasonably avoided.

Kind regards,My Hubby

Nice, huh?

The response was swift, and we set up a meeting with them on Wednesday, Jan 14th.

Let me just say, that I love our RE. She has been so responsive throughout the last three years. She did not let us down this time as well.

We met with our RE while my surgeon finished a surgery on someone else. He wanted to join us as soon as he was finished. Our RE told us that this had caused a big stir at the practice. She wanted the conversation with us to take two tracks: one, what was the recommendation for me, and two, where the lines of communication broke down.

That sounded good to us, as that was our plan as well.

Our RE reviewed our history, spoken with some high-risk OB's and determined that it would not be her recommendation to have a fet.al red.uction. Indeed, in very scientific terms, she said that our increased risk of a catastrophic failure (uterine rupture in the absence of contractions), was about 0.25% higher than others. Yes, there IS a decimal place there. However, the risk of losing the other twin when having a fe.tal red.uction is 0.5%.

In turns of where the lines of communication failed, our RE pointed out 3 places: 1st when we called our RE's nurse to inquire about Dr. Surgeon's recommendation prior to transfer. That should have been routed to either our RE or to Dr. Surgeon. Second, on the day of transfer. Perhaps Dr. OTDOT should have called Dr. Surgeon to confirm, as this was not a "normal" conversation that would happen at the time of transfer. Third, when someone reads a recommendation of such dire news, it should not be done over the phone by someone other than the person recommending it.

These were the exact points that hubby and I wanted to bring up as well, so we felt comfortable knowing that there was someone who took this as seriously as we did. Our RE said that there was already a meeting being set up to discuss this incident and how to address these issues in the future. And, intriguingly, they are talking about having a discussion with the patients prior to transfer about the possibility of a fet.al red.uction and whether that information should come into play when deciding how many embryos to transfer.

Call me flabbergasted at this last statement. Am I the only one who might have a problem with reduction? Does everyone accept this possibility so easily? I think not; but, I'm not sure why this has not come up before.....

In the end, we were quite happy with our meeting. But we didn't get a chance to speak to Dr. Surgeon, as his surgery was running hours late.

We did speak to him via email over the next few days, I will update on that soon.

Sunday, January 11, 2009

Thank you everyone who has left such kind messages for me. It is really comforting to know that there is a group of people pulling for our family. This is the kind of thing you can't share with many people....

I think a lot has happened, and yet nothing has happened. I went home after meeting with our new OB, I was unable to keep anything down. I had a hard time keeping anything down the next day as well. This bout of worry and sadness has seemed to kick up the "all day sickness" that seemingly started to subside.

We have an appointment to speak with a specialist in maternal fetal medicine dealing with multiples on Jan 21st. First, we have an ultrasound, then we meet the doctor. I'll be a day shy of 12 weeks by then. Sigh.

In addition, we have set up a meeting with the REs at the baby-making factory to discuss why we were given the option to transfer two embryos when the surgeon (and fellow RE) in the practice would be so opposed to me carrying twins. And also why the doctor doing the transfer said the "only thing in my chart was that I should deliver at 36 weeks".

What is probably the scariest part about this whole thing, is that IF my uterus was to really rip in half when carrying twins, I would have been blindly unaware of this impending danger. Since my husband was the only one who remembered the surgeon saying I shouldn't carry twins AND since we insisted on calling the clinic multiple times after we found out we had twins AND waiting for weeks for an answer....that is the only reason (our dogged determination), I repeat the ONLY reason, I was given such information.

Not before the transfer. Not after the 1st ultrasound. Not after the second ultrasound. Not even at our "graduation day" from the RE. Only on the phone from the nurse after "a long meeting" with the surgeon more than 2 weeks after we inquired.

If I feel up to it, I'll post the email my husband sent to the RE practice in the next few days. It is very well written, very clear, very respectful, but pointed.

I'm not sure what we are going to "get" out of this meeting on Wednesday. Hubby wants an apology, but more than that, I think he wants more is to speak with the surgeon about his recommendation. He also wants to make sure that this information is directed to the specialist. My hubby is hopeful that the actual written recommendation by the surgeon is not as dire as I made it sound. As for myself, I am not expecting much out of the conversation. I feel pretty beaten down right now, both physically and emotionally.

Wednesday, January 7, 2009

I did eventually hear from the surgeon yesterday...just as I was sitting in the waiting room for the appt. Not the news I wanted to hear: Dr. Surgeon says no way on the twins. Actually, it was said much more professionally, to the tune of : given the mutilayered surgeries that were needed, it not recommended that the patient carry twins. In this unfortunate situation, it would be best to take the extreme measure of fe.tal red.uction.

I'll just let that sink in a moment.

You can imagine how upsetting that was for me. Tears were streaming down my face and the poor OB that I met for the 1st time yesterday met me and immediately asked me what was wrong. When I told her about the news, she seemed very positive that all would be OK. She kept telling me that with proper attention everything would be fine. Sorry, I don't jump so quickly on that train any longer.

She did have an hour and a half consultation with me. I'm sure she missed her lunch. I know I missed mine, and I paid for it dearly. At least there wasn't anything to come back up.

She also set me up with a maternal fetal specialist at the hospital that we did our IVF procedure. The specialist wants to wait until the end of January for an ultrasound, and then my hubby and I will have a consultation.

I left work early yesterday and called in sick today. I spent all last night either in long conversations with my husband, or crying. I tossed and turned all night. And if you wondered if that helped morning sickness, the answer is no. I barfed in the middle of the night and have barely kept my food down today.

I haven't cried today, although I am a little teary-eyed now.

I cannot even tell you all the things that are going around in my head: from "why wasn't this info in our medical records so that we would only transfer one embryo" to " why did I convince my husband to transfer two" to "what happens if I have to make a choice that I swore I would never make" to " what will happen to my job and our second source of income if I am incompacitated for many months......"

I am a spiritual person; I want to give this to G0d. Really, I do. But my poor, poor mind cannot help but jump from one possibility to another......

Monday, January 5, 2009

Things have been happening in fits and starts, not unlike the buildup to an IVF cycle.

Eat well. The babies are growing. Try to relax. NOW GO TO MULTIPLE DOCTOR'S APPOINTMENTS. Now try to relax and eat well.

I did hit a few personal milestones. I will be 10 wks pregnant on Thursday, so that's a first. Actually, just being pregnant is a first, so everyday is a milestone. Also, I bought a pregnancy book. It took me 3 trips to different bookstores before I had enough courage to actually buy it. Not that I'm superstitious or anything.....

While things seem to be moving, um, undetectably, I continue to pretend that I'm probably still pregnant. I could use an ultrasound every week. Yes, that would be helpful.

In terms of who knows that I am pregnant, that is spreading a little faster than I had anticipated. One of my high school friends emailed me congratulations the other day. I had forgotten that her parents and my grandparents have morning coffee in the same place. My parents are back in my (tiny) hometown and they have run into two more of my former high school friends. My parents said that my former classmates wished me congratulations. I guess I didn't make it clear to my parents or my grandparents that although I told THEM that I was pregnant, that I wasn't ready to make announcements to distant friends yet.

I have never been in this situation before, so I don't know when I will really be ready to tell everyone. I know 3 months is the usual marker. So I am guessing I will mention it at the beginning of February. That will be almost 14 weeks.

In other baby-related news, I meet with an OB tomorrow. I want to have a very frank discussion about all of my uterine issues and pregnancy. I think if I can feel that the OB is on top of everything I'll relax a little more. Unfortunately, I STILL haven't heard back from the surgeon who declared that I "shouldn't carry twins." I understand that he should have a vacation, but this is a rather important issue. My RE (who is in the same practice as him) left him a voicemail and an email on the 23rd of December and we have not heard a peep. I contacted the nurse and she says that the surgeon has not contacted her or replied to the email. Nice.

Finally, as I ramble untill everyone quits reading, I have a message for Beth, who kindly left me a comment, like, 50 years ago. She asked if I did anything special for our donor cycle. The answer is "not really." Mostly I tried to keep myself calm and distracted as best I could. I didn't eat/not eat certain foods. Nor, did I go to an acupuncturist or massage therapist. I feel like I have enough doctors appointments as it is, so I didn't want to add more. I do, however, regularly (2x/month) a mental health therapist as I have a panic/anxiety disorder. She also has patients who are undergoing IVF, so I was encouraged to talk about that freely. That was quite helpful.

Well, that has been my 2 weeks in a nutshell. Oh, yeah, I gave my husband "Rock Band" for Christmas. I am getting really, really tired of electric guitar solos......